Hi Everyone, my name is Juri. I have been living with ALS for 12 years now, and I had been gone from this site for about ten years, and during that period of time my FRS dropped from 23 to 1. I am on vent 24/7 (with the use of tracheotomy), I use an eye gaze computer for communication, and I...
This van is in excellent shape. Current mileage is 36,200 miles. V6, automatic transmission, FWD. Used for just 9 months. It drives very well, excellent handling, very smooth. Tires are excellent. Manual drop down drive up entry ramp which is very easy to operate, not heavy, & able to...
Yay...I received my new sling this week from the Osprey sling company in England. It fits better and is much more comfortable. I was afraid my arm was going to break with the other one. The new one was 1/3 the cost of the old one. They don't ship to the US but if you have a friend in...
Good evening everybody. Gratitude in advance to anyone who reads this, or takes the time to respond.
From reading all the stickies, I seriously doubt I have ALS. My heart goes out to those that do. That said, there is so much knowledge and experience here and if possible, I would like to pick...
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Hello,
I'll preface this by saying that I've had an on-again off-again fear of ALS that began 7 years ago, when I first noticed diffuse muscle twitches across my body and made the mistake of consulting Dr. Google. At that time (7 years ago) I informed myself about the nature of ALS symptoms...
While my work may have limited use for other PALS, hopefully someone will benefit. I purchased the specific RV with it's 8 x 12 ft garage for its adaptability. I removed the two queen beds, but kept the electric lift. In the first picture, I have installed a twin bed with electric leg and...
I am new to this forum. My husband was diagnosed several years ago, although looking back, I see the changes in his personality well before his diagnosis, but didn't know what it was at the time.
I try to take things one day at a time, but finding myself increasingly drained of energy. There...
I have familiar ALS with the C9ORF72 mutation. Progression is pretty quick, since being diagnosed in February 2017 the symptoms developed from not being able to lift my right foot to the current stage of not being able to walk or stand, not being able to lift my right arm and hand and the onset...
Hello all,
My husband has left leg onset and when we got the unofficial diagnosis on May 12th by the neurophysiatrist, the EMG showed the ALS is in his right leg, too, although he has yet to show symptoms.
My question is, if the EMG picked it up in his right leg back in May, when would the...
I have an overhead freestanding lift system. As it turns out it is too big for the bedroom at 11.5 ft. long. The problem is that the feet/legs are 4 ft wide and no matter where we put it, it will block a doorway. We've decided to cut it down and reassemble a shorter length for our bedroom and...